My husband was diagnosed in December of 2014 with GBS. Although he has come a very long way in his recovery. His hands and arms were definitely hit the worst with paralysis and OT has certainly helped with this. My concern is that he seems to almost constantly shake / tremor in the hands and arms, as well as his legs which I have heard of being referred to as "the dance". He is on 1200 mg of Neurontin daily and sometimes it seems to ease it, sometimes not. I was wondering if anyone else had these symptoms continue for this amount of time and if so, how long did they last? Also want to thank everyone on this site for the information and encouragement provided!
How severe was his GBS initially? I had a milder case but had those tremors for months. I can't remember when they stopped because it just got better so gradually. I'm 9 months out and do not have visible tremors now at all but I do feel the nerves shake inside at random times especially during the night and of course, still have muscle twitches. I remember that I accepted that I might have those tremors forever (it makes you feel like you're anxious even when you know you are not) but they did go away so maybe with time it may recover for him as well. I drive a stick and I used to have to put the car in neutral and pull the hand brake at ever light because my legs would shake so badly. Some I know was weakness and some was that tremor. My hands were the worse with the tremor too and they don't shake at all. Glad I didn't get rid of the car. I figured the practice probably helped though it was frustrating at the time.
I never took the Neurontin so I'm not sure about how that may affect the body as far as tremors go. I know that it helps a lot of people with the neuropathy. The burning pain went away for me as well. Good luck to him in his recovery!
Hi Aflynn. I had a very serve case of GBS and was totally paralyzed for several months, trach, PEG tube, etc. I was in the ICU for a few months, a neuro rehab hospital for a few more and a nursing home for a couple of months. When I first started regaining the use of my arms and legs and before I could do anything without 100% help, I had severe shaking and twitching of arms and legs. Even when I was in out-patient therapy I was still getting tremors. As more time went by they started to subside. I will still have mild tremors occasionally especially at night, but most people would not even notice.
This July 2015 I will have been back home for 2 years. My best guess is that he will gradually improve with the tremors. Good nutrition, exercise, vitamins and supplements helped me, I take Valerian Root and 5HTP along with my Neurotin at night and I sleep pretty well.
It may sound like a broken record and you will probably get tired of hearing it, but it just takes time. Stay positive and encouraging to him. You will see the improvement before he does himself. Hang in there and it will be okay. (Oh, if you haven't already, take pictures/video and keep a journal. You can plot progress much better that way.)
Keep your chin up and he will be doing it too.
Hi Tom! Do you know what causes the mild tremors at night?
Tarhealing, I really don't know and the doctors don't either. My best guess is my lower legs, feet, and fingertips are still pretty much numb and and that an occasional nerve is logging back online so to speak. When they do I believe that is what is causing the twitch and tremor. My arms are not hardly numb at all compared to 2 years ago and they very rarely twitch.
My feet are not as super sensitive as they were a year ago so I know they are improving in the nerve regeneration. Because my fingertips are not back to normal I believe that is why I get an occasional finger tremor.
How are you doing? Are you seeing improvement? Do you get tremors or twitching?
I had lots of twitching (mostly calves) and tremors when all of this started for me in June 2014. I had almost completely recovered with no tremors and very few twitches until 8 months later when I got a sinus infection and had a milder re-flare of symptoms. I had numbness again that didn't last more than a couple weeks along with an increase in twitching and weakness again. It seemed to hit all of the previous places. Again, it was nowhere near what it was in June but concerning that it felt like another backslide. I feel like it's turning around and I am getting my strength back again. Went to the gym for first time today. At night, however, I get these random occasional nerve shakes or tremors coupled with increased twitching that wakes me up. It usually just lasts for minutes but sometimes the twitching will be focused in a certain area for a few days. It's always random in other places mostly legs but now seems to be in my abdomen, chest, spinal area at night sometimes. It used to never stop and my calves were so active that I couldn't sleep. I'm so used to twitching now and it's so much less that I just go back to sleep. My arms rarely twitch too but tremors were pretty bad with my hands originally and I did have some hand weakness again this time. I would like to know more about what the twitching & tremors really mean.
I have the twitching as well. I had a mild case if you can call anything GBS/MFS mild. The best answer i got about the twitching came from my cryropractor and he said the as the nerves are reconnecting the brain has to learn what each one does. and when the bain has free time it will fire of a signal and try to see what happens so that why we notice more twitching when we try to go to sleep. the twitching used to be so bad i would use it like counting sheep to fall asleep. Right calf, left thigh left hand, left bicept etc.......
i never had tremors for to say but i would get very shaky because my muscles were so weak and i was trying so hard to do something.. these have past as i got stronger.
For the last few days, I have been experiencing tremors inside of my body-sometimes my face, sometimes my chest area, then sometimes it's better. It's especially worse in the evening after I've been up working or doing things all day. It just feels like I'm quivering inside but my hands are completely steady. It really feels like the nerves are shaking but only in isolated areas that come and go throughout the day and night. So weird! I don't know if I am just overdoing it right now. This re-flare is really difficult. Even feels like my heart races at times or misses a few beats. I've never had heart issues so this is strange. My blood pressure and pulse are low. Does anyone feel the shaking inside but not see it on the outside? Just trying to figure this thing out at this point.
I have never had any tremors. Could it be from medications given now? I was diagnosed over 39 years ago. 1976 I spent 7 weeks in the hospital, paralyzed. It never went to my lungs though. Very greatful for that. I was never given meds. Just rest. A lot of physical, occupational and respiratory therapy though. As I have gotten older I just watch out for over doing things. I sit and rest. I have had numbness in my fingers for awhile. Don't ask me to check your pulse. Over all I'm OK. I have read a lot about this syndrome that we all will have forever. Take care everyone.
My husband got gbs march 2015. He has had 2 rounds of ivig. he has a trach and has a temporary pacemaker. I see some things changing like he can move his feet, his thumb on the right a little, he has movement in his eyes and he just started moving his lower jaw. I don't know what the future holds for us. We will be married 42 years in november. Can someone please enlighten me.
Hi Jan, so sorry he is having such a hard time. I had a milder case but I know others on this site who came from similar points to make good recoveries. This is a great site for support. Stay strong and positive!
Jan, I am so sorry to here what your husband is going through, and you too. Stay strong. Your husband needs that from you. This is a great place to vent if you need to. I never went through the ivig meds. I here it helps spend up recovery time. My prayers are with you and your husband.